Under normal conditions, I would shy away from writing an end-of-year reflective piece, but my condition is not normal. That’s to say, it isn’t the condition I had become used to, although I may have to accept it as my new ‘normal’.Many things have changed during 2018. I began the year believing that I had – at some point in 2017 – suffered a stroke which was causing the problems I was experiencing with the sight in my left eye. I was wrong about that, just as I’d been wrong to ignore my developing battery of symptoms for so long. I’d been scared of what I might discover about my health if I investigated matters. I’d been a fool.

In 2018 I learned – and I’m still learning – how to go about accepting what is. That, I think, has been one of the major lessons of the journey that my family and I have been on. Things – regardless of how I might feel – have changed, and there is little that I can do about many of the changes that have arrived to test my endurance or patience. I must instead accept them.

For much of my life I have lived within a dichotomy; a shy, oversized man employed in roles which required me to behave forcefully and confidently. A large and (yes, I must accept this) strong man capable of being proficient in various sports, and of using my physical power to be useful in a wide variety of situations which might cause difficulties to anyone smaller or less strong than I. These things have changed. I must accept a physically reduced version of who I once was. I must accept those things of which I am no longer capable. I must accept the word ‘disability’ as it now pertains to me.

I’ve learned this year how much my physical stature and strength was part of what helped me survive emotionally. As that physical strength has been stripped away, my emotions have been laid bare, my vulnerability visible (it has seemed) for all to see. My lack of emotional strength has been painfully apparent as, at various times of the year, I’ve leaned so heavily upon my wife’s remarkable depth of love for me. I’ve become aware of it, and accepted the truth of it. It has always been who I really am.

2019 sees a different person looking out at the world from this familiar-looking face. The face in the mirror looks much the same (a little more grey, a little fatter, a little more tired) but I’m not the same; I couldn’t be.

Counter-intuitively perhaps, the easiest response would be to fight against the difference; to try to regain what I once had and to try to be who I once believed I was. The harder course is the one that I am choosing, because I believe that wisdom lies along the way. I choose to embrace the difference and to rebuild my small world in acceptance of who I am now. I’m assisted by the fact that my new community has never known the previous version of me, and so there is little or no pressure to revert from the people who have met only this version of me.

My partner in life, and my children know, of course. What, I wonder, is this like for them? What is it like to see a person they love changed in this kind of way?

What is it like, and how, now, can I – with all the love I hold for them - help them?

It’s sometimes hard to know where to lay - and how to express - one’s frustration, disappointment and downright anger when the medical world lets us down. Recently - with some reservations, because health workers have a difficult, under-appreciated role - I provided the local major hospital with a list of disappointments (I left out the minor ones and concentrated on the major, including the permanent effects upon my physical health) and had hoped to have put that unfortunate series of events behind me. However, it seems that consequences of my earlier illness have not yet finished tweaking my future.

The latter I can understand and with a smidgen of curmudgeonly reluctance, even accept. Health, once disrupted, can become a fragile thing, subject to the whims and fancy of a cold, unfeeling universe. So be it. This is the hand I’ve been dealt, and it’s a lot better than many. But…

My health – specifically, the workings of my until recently taken-for-granted pituitary gland – is no longer to be relied upon. My surgeries in the spring of this year saved me from an expanding tumour at the base of my brain (cozying up, as it was, to my pituitary), but placed in jeopardy the long-term viability of that important little lump of flesh. Sigh. OK. That exchange seemed a fair gamble to make. No complaints about the nature of the treatment; there was no realistic choice.

But now. NOW…almost twelve months after first meeting with an allegedly esteemed endocrinologist, we have learned that he has failed to inform us of some extremely pertinent issues which not infrequently rear their heads after such an illness and treatment. These issues – I’m ragingly angry to discover – constitute a real and present danger to my health (even, in extremis, to my life) if left unrecognized and untreated. The fact that he has mentioned nothing of them is little short of negligent, and yet it follows in a series of similarly egregious disappointments which have left me bewildered and divested of my previous confidence in the medical profession.

My confidence in doctors is severely dented. Dented, but – amazingly, in retrospect – not yet shattered. My surgeon was obviously a skilled person, and he was open and honest about what he was going to be doing, and the risks of doing it. In other words, he was what I hoped for and expected. The after-care has been what’s shocked and disappointed me. Not only held against what I think should be the very highest standards reserved for health care, but frankly held against any reasonable standards of competence. If I had ever dropped the ball so badly in any of the jobs that I’ve had, I’d have expected to be fired. This, however, is messing around with my life and not just the quality of it, but the extent of it.

Mostly because I have a stake in such matters, my thoughts not infrequently turn to the idea of why diseases such as diabetes remain uncured. I'm not a medically trained person (indeed, some would say that I'm barely house-trained) and neither do I have a background in chemistry or biology, but I have been fortunate to receive a good education, and I've kept my eyes and ears open for the last fifty-something years.

The western world is increasingly steered and partially controlled by enormous and often sinister multinational commercial interests, and some of the largest of those commercial interests happen to be...drug companies. Now, I'm not a conspiracy theorist but I'm also not averse to disbelieving the propaganda that the public is fed by politicians and vested interest groups. I know that my thoughts on this subject may sound a little out there but I'm not trying to convince anyone, I’m merely offering up the thoughts that occur to me as I ponder my own medical situation.

Some observations I have made include:

Medicines for chronic conditions tend to be among the most expensive for the customer to purchase. I know this from my inside knowledge of the pharmaceutical retail sector.

Drug manufacturers exist and thrive off a seemingly endless demand for their existing products – so, what motivation do they have to fund CURES? It would be like producing the everlasting gobstopper; a product which makes itself redundant.

By definition, chronic diseases are a reliable source of demand for the drug manufacturer's supply. Sounds creepy, but in business terms, it's a simple truth.

Regular stories of 'breakthroughs' in clinical research seem to fade away with time and rarely if ever lead to the promised results.

Watching USA cable channel pharmaceutical commercials, the lists of potential side effects of most of the products on offer are so mind-boggling as to utterly defy the common sense notion that the drugs have been deemed safe for use. And yet, we buy them.

It seems that death is good for business - the drug business. Death provides the fear factor, the motivation for people to seek out chemical remedies for their symptoms - to seek instant fixes for issues which may not be fixable, to keep at bay the grim reaper while maintaining every other element of a lifestyle which in all probability is connected in some way to the cause of our symptoms. We are not encouraged by western culture to seek out reasons or causes; au contraire, we are instead told to deal merely with the symptoms. By doing so, we stay on the hook for never-ending courses of drugs.

The brutal truth is that the companies who provide drugs have no economic reason to push genuine research into cures for the modern scourges, but have a great deal of incentive to keep customers needing medication. The gravy train, it would seem, never stops rolling.

What this means is that sickness and suffering is the cost of doing business - our cost, their business.